babesia duncani

[bulldog24]

Well my son is a strep only pandas patient who has a strange test result. I think it applies.

 

PANS Is caused by many things not just strep. There are a lot of pans kids out there. Sorry but let the tomato fly

[Orion]

Is this info. strictly for Lyme? Sometimes it is confusing for me as there is a lot of info on Lyme and I am not sure what would apply for me being a pandas only parent. don't throw rotten tomatoes at my post." ha ha!

 

I totally understand how you feel, but for different reasons.

 

We are dealing with PANS/PITAND- via??? Lyme, Myco.Pn. and/or strep? DD seems to have hit the trifecta. I don't feel totally at home on either site, PANDAS/PITAND or Lyme, as what we are dealing with is so much more than just one or the other.

 

I read both sites, and get gems of info from each, since there is a lot of issues beneath the surface that is common to both (immune, genetic, auto-immune, disregulation etc).

[aidansmom]

agree with Bulldog and orion.

 

It is just not that clear cut to discuss certain infections (even Lyme)only on Lyme board. It really is not black and white for many of us. Many on the PANDAS board find out later that they may have Lyme or other coinfections. Many like my son have had issue with strep. Also, there is a major overlap in symptoms between the two.

 

On this topic, it is simple enough for someone who thinks that it does not apply to their situation to just stop reading the topic.

 

Babesia is something that has been in the news lately and has even been spread through blood transfusions.

 

http://www.nytimes.com/2011/06/21/health/21ticks.html?_r=1&ref=health

 

No tomatoes though.

[dcmom]

I think the best idea may to be to post questions like this on both forums.

 

It really is a lyme specific question- even the subject shows that- however I understand wanting the perspective of "pandas only" parents.

 

I think, because of the heated discussions in the past, that pandas parents will feel more comfortable answering it on the pandas forum, and maybe all are better served if lyme parents can answer it on the lyme forum. However so far all have discussed with restraint

 

Now to the question-

 

I know nothing about Babesia, nor do I know what type of test you had. However, the reality is that antibody tests can be completely messed up for someone with an autoimmune disorder (or who have had Ivig in the not too distant past). Your best bet is to either- pursue testing that is not antibody based to confirm or rule out diagnosis, or to wait and see- redo the bloodwork in two to three months and see where you are. Also I would follow symptoms. If your child is in remission- I would not treat for anything- if your child is still symptomatic, obviously you may need to pursue.

 

Hope this helps.

[SSS]

I was told by our Dr. that all of the donor antibodies from IVIG completely leave the body in 4-6 weeks-

So testing 8 weeks post IVIG would be accurate, and like Bulldog, we waited a full 12 weeks post IVIG to do our further (Lyme and co.) testing.

[Dedee]

I understand how confusing all the information can be. It's just a lot to take in over all. However, if we had discussed only strep when this was strictly a PANDAS board, I never would have picked up that my daughter could have been activated by Myco P instead of strep (Hence PANS). So I do / have learned so much from posts that discuss alternate theories. PANS is an infection triggered neuropsychiatric issue. Many infections (bacterial & viral), are causing these kids problems. I don't see anyone here pushing their opinions off on others. Most just respond with their personal experiences in hopes that it may help another family. It may or may not be applicable to the reader.

 

For me, my brain can only absorb so much information. So if I am reading a thread that seems really complicated and it clearly has no bearing on my situation (so I would have nothing to offer), I try to stay off of it. I can't crowd my small mind with information I can't handle at that time. It doesn't mean that thread won't be the answer for someone else.

 

This is a horrible illness.....it's going to take many minds to figure this out. Who better than those who love these kids the most.

 

JMHO - Dedee

[fightingmom]

I understand how confusing all the information can be. It's just a lot to take in over all. However, if we had discussed only strep when this was strictly a PANDAS board, I never would have picked up that my daughter could have been activated by Myco P instead of strep (Hence PANS). So I do / have learned so much from posts that discuss alternate theories. PANS is an infection triggered neuropsychiatric issue. Many infections (bacterial & viral), are causing these kids problems. I don't see anyone here pushing their opinions off on others. Most just respond with their personal experiences in hopes that it may help another family. It may or may not be applicable to the reader.

 

For me, my brain can only absorb so much information. So if I am reading a thread that seems really complicated and it clearly has no bearing on my situation (so I would have nothing to offer), I try to stay off of it. I can't crowd my small mind with information I can't handle at that time. It doesn't mean that thread won't be the answer for someone else.

 

This is a horrible illness.....it's going to take many minds to figure this out. Who better than those who love these kids the most.

 

JMHO - Dedee

 

Totally agree.

And, I came to the PANDAS board because that's where we were - and strep and sinus infections have plagued us for YEARS, so it seems we certainly fit here. However, lyme seems to have just complicated our already complicated situation and getting the feedback from parents dealing with both is really helpful. The white paper update including viral and specifically lyme to the PANS/PITANDS criteria, seems to indicate there is significance as well.

[patric]

Hey guys,

You all bring up a lot of great points! Thanks for sharing your perspective as I hadn't thought of it that way!

I liked and agreed with what Deedee said about "crowding my small brain with too much info" as that's what I was feeling late last night when reading all of this. Ha ha!

 

Anyway, I also do want to thank everyone for making it feel safe to share a differing opinion. I still may have a somewhat differing opinion about this subject,, but I respect that all of you do too, and really you have some very valid feedback. Thank you for listening and responding in a positive way .I am happy we are able to share many different views constructively.

Cyber hugs!

[fightingmom]

Hey guys,

You all bring up a lot of great points! Thanks for sharing your perspective as I hadn't thought of it that way!

I liked and agreed with what Deedee said about "crowding my small brain with too much info" as that's what I was feeling late last night when reading all of this. Ha ha!

 

Anyway, I also do want to thank everyone for making it feel safe to share a differing opinion. I still may have a somewhat differing opinion about this subject,, but I respect that all of you do too, and really you have some very valid feedback. Thank you for listening and responding in a positive way .I am happy we are able to share many different views constructively.

Cyber hugs!

 

I have to agree with this, too! I haven't been around long, so I'm sure there are heated debates that I missed. However, this is one of the most supportive forums I have ever found - even when not everyone has the same thoughts or perspectives. It's really nice to know that you can toss something out there and even if others don't agree, you don't have to worry too much about "tomatoes".

[Dedee]

Patric,

 

You are right, this is a great board and I would be lost without all of you. Thank you for your participation. I have been here off and on since my first son was diagnosed nearly ten years ago. Wow, we have come so far. My family would not be where they are if not for the information and support I have gotten here. Cyber board hugs to all {{{{{{ }}}}}}

 

Dedee

[fightingmom]

Just came across this...and if it's accurate, looks like my son and I need to really explore more - we both did have titers but they were low.

 

Approximately 25%- 66% of Babesia patients are known to be co-infected with
Lyme disease. The symptoms may continue for long periods of time, subside,
then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An
acute or current infection may show a higher reading on the IgM test initially.
There are over 100 species of Babesia in the United States but only ONE or TWO
species are currently detected by commercial labs.

 

http://sites.google.com/site/marylandlyme/50-faq-answers

 

This info on 102 children with congenital Lyme was interesting, too:

 

http://sites.google.com/site/marylandlyme/pregnancy-lyme/gestational

Charles Ray Jones, M.D., Harold Smith, M.d., Edina Gibb, Lorraine Johnson, JD, MBA

 

• 102 children with gestational Lyme Disease

• Mothers had either untreated or partially treated LD

• Children were diagnosed between the ages of 1 – 5 yrs old

• Symptoms were present in infants but overlooked until they gradually progressed in frequency and severity.

 

 

RESULTS- Percentage of children with the following symptoms from gestational Lyme

 

27% Cognitive delay

21% Speech delay

19% Reading/writing problems

17% Articulation delay

13% Auditory/visual processing disorder

12% Word selectivity

8% Dyslexia

23% Anger or Rage

13% Aggression or Violence

11% OCD

54% Irritability and Mood Swings

13% Emotional Problems

13% Depression

7% Suicidal thoughts

56% ADHD

36% Sensory sensitivity manifested as hyperacuity

43% Photophobia

9% Motion Sickness

23% Tactile, Taste or Smell sensitivities

9% Autism Spectrum Disorder

 

Edited April 19, 2012 by fightingmom

[fightingmom]

So, did you ever get more info. on this? I was actually reading the wrong babesia titers before. There are two on our labs, the "ducani" titers came in as 1:256 for us both.

[bulldog24]

Yes thats what ours said.

[Orion]

Question...I thought I read somewhere about a rash with little red dots, I have had that on my stomach for a long time. Sometimes they are much more obvious, other times they fade. Right now it's VERY bright red and a few more dots are showing up. Am I crazy, or is this somehow related to coinfections? Look like red freckles.

 

Several of the co-infections can cause rashes. Except for Bartonella,they aren't too common, but they do occur. Take some photos, date them, and add it to the Lyme rash photo to show the Dr.

[fightingmom]

Question...I thought I read somewhere about a rash with little red dots, I have had that on my stomach for a long time. Sometimes they are much more obvious, other times they fade. Right now it's VERY bright red and a few more dots are showing up. Am I crazy, or is this somehow related to coinfections? Look like red freckles.

 

Several of the co-infections can cause rashes. Except for Bartonella,they aren't too common, but they do occur. Take some photos, date them, and add it to the Lyme rash photo to show the Dr.

 

Great idea. Thanks!!! Sometimes the obvious is so easy to overlook. I wouldn't have thought to take a pic of this one, too. Stupid!